Grandparent Survey

Do you have a child with an autism spectrum disorder?

Do you also have grandchildren?

If yes to both, then this study is for YOU.

The risk that autism will affect grandchildren in families like yours is unknown, and this brief survey is designed to gain new knowledge about the level of risk, and which second generation offspring might benefit from early intervention.

Please note that» All of your information will remain confidential (only your IP address is logged to prevent duplication of data),» There is no cost to participate, and» You will have the option to provide your contact information so we can tell you about further opportunities for study participation (which include compensation).

Before starting the survey, please answer 2 screening questions to determine if you are eligible. If you are eligible for the study, you will next be asked to review the informed consent language and then give consent at the beginning of the survey.

Do YOU have a biological CHILD with an autism spectrum disorder?*

Biological refers only to your children by birth, not via marriage or adoption.

Yes

No

Do you have at least one biological grandchild over the age of 2?*

Biological grandchildren are related to you by being born to one of your own biological children, rather than being related only by marriage or adoption.

Yes

No

Eligibility Determination

Thank you for your interest in this survey, but at this time you are not eligible to participate. If you are interested in learning about other studies through the Social Developmental Studies Laboratory, please contact Teddi Gray at 314-286-0068 or grayt@wustl.edu.

You are eligible to participate in this survey. If you wish to proceed, please review the informed consent below and click "Give Consent and Proceed to Survey"

Second Generation Survey Project – Consent for Grandparent Web Survey

Principal Investigator: Natasha Marrus, MD, PhD

Research Team Contact: Daniel Gray, MSW (314) 362-3734

Thank you for your interest in this study. This is a research study. We invite you to participate in a research study being conducted by investigators from Washington University in St. Louis because you have a biological child with an Autism Spectrum Disorder (ASD) and are also a grandparent. The purpose of the study is to measure the transmission of autistic traits within multiple generations of families with an individual affected by ASD. To do this we are collecting family histories of an ASD diagnosis to ascertain the prevalence of recurrence within future generations. The National Institutes of Health, is funding this research study. Approximately 500 people will take part in this study at Washington University

If you agree to participate, we would like you to complete a brief survey regarding your children and grandchildren and whether they have an ASD diagnosis. You are free to skip any questions that you prefer not to answer. This form will log your IP address, which the research team will only use to prevent duplication of records.

There are no known risks from being in this study, and you will not benefit personally. However, we hope that others may benefit in the future from what we learn as a result of this study. You will not have any costs for being in this research study. You will also not be paid for being in this research study.

Your participation in this study is completely voluntary. You may choose not to take part at all. If you decide to participate in the study you may stop participating at any time. Any data that was collected as part of this study will remain as part of the study records and cannot be removed. If you decide not to take part in the study or if you stop participating at any time, you won’t be penalized or lose any benefits for which you otherwise qualify.

We will keep the information you provide confidential by keeping all web-based information transmission encrypted on this secure Washington University website. Data files will be stored on a computer secured behind the Washington University firewall. However, federal regulatory agencies and Washington University, including the Washington University Institutional Review Board (a committee that reviews and approves research studies) and the Human Research Protection Office may inspect and copy records pertaining to this research. If we write a report about this study, we will do so in such a way that you cannot be identified. If you do not wish to participate in this study or want to end your participation in the study, close the web browser. You will not be penalized or lose any benefits for which you otherwise qualify.

We encourage you to ask questions. If you have any questions about the research study itself, please contact: Natasha Marrus at 314-286-0089. If you feel you have been harmed from being in the study, please contact: Natasha Marrus at 314-286-0089. If you have questions, concerns, or complaints about your rights as a research participant, please contact the Human Research Protection Office at 660 South Euclid Avenue, Campus Box 8089, St. Louis, MO 63110, 1-(800)-438-0445 or email hrpo@wusm.wustl.edu. General information about being a research participant can be found on the Human Research Protection Office web site, http://hrpo.wustl.edu. To offer input about your experiences as a research participant or to speak to someone other than the research staff, call the Human Research Protection Office at the number above.